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Author Topic: 2 Things I've learned at IHD  (Read 5212 times)
Sunny
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Sunny

« on: August 14, 2008, 12:02:02 PM »

I was ignorant about kidney disease before coming to IHD. Most technical information I've learned came from reading posts here.
Doctor's only tell you things on "need to know" basis and I was too ignorant to know what questions to ask. Not anymore!
So, two things I've learned at IHD:
1. GFR (glomular filtration rate)
2. PRA (antibody levels)
____________

How about you?
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Sunny, 49 year old female
 pre-dialysis with GoodPastures
paris
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« Reply #1 on: August 14, 2008, 12:46:58 PM »

Good question, Sunny :2thumbsup;   The doctors only give you the basic information.  I have learned how to be in control and not just take their word for it.  Best thing I have learned on IHD---I am not alone! :grouphug;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
Bajanne
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Goofynina and Epoman - Gone But Not Forgotten

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« Reply #2 on: August 14, 2008, 12:54:03 PM »

Only 2?  I have learned SO much, it is kind of hard to pick only two. First of all, I learned the same things as Paris.
Also, I learned that starfruit (carambola) is toxic for dialysis patients
I learned the difference between a graft and a fistula.

That's all for this post.  I'll be back!!
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"To be found in Him, not having a righteousness of my own ...but that which is based on faith"



I LOVE  my IHD family! :grouphug;
twirl
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« Reply #3 on: August 14, 2008, 12:59:52 PM »

I have not learned GFR or PRA
but I know
W&W and Mibarra have yorkies
Flip can cook and he has good advice, is positive and loves his dawg
Sluff is a barrel of laughs
Mikey has Queen Ruth-- I'd love to meet her
David 13 has a heart of gold
Stauffenberg's opinions are hard to take but nevertheless important and I read them
Kitkatz is Kitkatz----  enough said
Ang is a good friend to confide in
and I have learned something I like about everyone on this site
RichardMel is the Casanova
oh and Chris is a genuis who needs more fruit and veg and I worry about him
I know something about everyone who endears them to me
and
well how I could go on and on
thanks
friends
and has anyone heard from Uniballer and Anna :bandance;
and bajanne loves in paradise and she knows how to size a photo
oh and
no better stop ====== too long
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twirl
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« Reply #4 on: August 14, 2008, 01:01:11 PM »

bajanne lives in paradise-------- :rofl; :flower; :cheer:
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G-Ma
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« Reply #5 on: August 14, 2008, 01:04:57 PM »

alllllllllll of the above, PTH and thank you all so much and yes paradise is where some of you live. My corner of the world is very pretty too.
Ann
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
thegrammalady
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« Reply #6 on: August 14, 2008, 02:29:21 PM »

i've liearned that i'm very, very attached to all of you!
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s
......................................................................................
If you can smile when things go wrong, you have someone in mind to blame.

Lead me not into temptation, I can find it myself.

Life isn't about waiting for the storm to pass, it's about learning how to dance in the rain.

Some mistakes are too much fun to only make once.

Meddle Not In The Affairs Of Dragons
For You Are Crunchy And Taste Good With Ketchup
KT0930
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« Reply #7 on: August 14, 2008, 03:44:48 PM »


I learned the difference between a graft and a fistula.


I also learned this. I have a graft, and for too many years to count was using the terms interchangably! I learned about NxStage, so that (many, many, many, many, many years from now) when dialysis is looming again, I'll know that PD and in-center hemo are not the only options!

Personally, I've learned that not everyone on dialysis are like the sick, wasting away, brought in on a stretcher, not taking charge of themselves or their care people that I've seen in the centers I've been in. All of you rock!!  :2thumbsup;

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"Dialysis ain't for sissies" ~My wonderful husband
~~~~~~~
I received a 6 out of 6 antigen match transplant on January 9, 2008. Third transplant, first time on The List.
Ang
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« Reply #8 on: August 14, 2008, 05:50:06 PM »

i've  learnt  that  i have  an  addiction  its  called  IHD.COM,  thank  you everyone :grouphug;
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live  life  to  the  full  and you won't  die  wondering
kitkatz
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« Reply #9 on: August 14, 2008, 08:37:37 PM »

Kitkatz is Kitkatz----  enough said   Just what do you mean by that???  :rofl; :rofl;

I am cracking up.

two things I learned.
1. People really do understand about dilaysis.
2. Bring an eggcrate mattress to put on those uncomfy chairs at dialysis.
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #10 on: August 14, 2008, 09:48:16 PM »


Before I came to IHD I didn't know:

1. That kidney disease has many causes, and doesn't care about your race, sex, education or financial status. It affects all kinds of people.

2. That you can really make friends, and get to know people, and love them, just by reading their words.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Chris
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WWW
« Reply #11 on: August 14, 2008, 10:28:36 PM »

I'm still leaning
                    and won't stop learning, I hope.

Where to begin with what I have learned is that other people have the same feelings about dialysis as you do and have the same morbid sense of humor that you do about it.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
kevno
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« Reply #12 on: August 15, 2008, 02:04:46 AM »

Don't call Kitkatz (KATE) :Kit n Stik; learn t hard way!!!!

Just like to know the site is here, when you are not sure about something to do with dialysis. As a renal patient for over 30 years+ you can always  learn something new on IHD.
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But this little saying keeps me going!!

"RENAL PATIENTS NEVER GIVE UP!!!!!!"
Trikkechickk
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« Reply #13 on: August 15, 2008, 05:16:48 AM »

I learned "not to be scared"!
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pelagia
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« Reply #14 on: August 15, 2008, 02:41:20 PM »

The enormous challenges of living with kidney failure (through the words of those that do it everyday).

How life's challenges can be successfully navigated when you have have folks who will help guide you with their experience, humor, friendship, caring,  :rant; and even :Kit n Stik;
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
kellyt
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« Reply #15 on: August 15, 2008, 03:22:16 PM »

I've learned that apparently all the punctuation keys have fallen off Twirl's keyboard!     :rofl;   :rofl;    "Vanna, I'd like to buy a period."

Just joshen!!     I love reading Twirl's posts.  I've gotten used to them and I read them like a poem.  Or whatever those things are called that are like a poem but they don't rhyme.

Love ya Twirl!    Don't change a thing!!!    :cuddle;



I truly believe I directed here by a higher power.   Epoman's passing date was exactly, to the day, one year after my Mother's.  I like to think they met at the Newbies In Heaven meeting and he told her about it.   :)
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
Adam_W
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Me with Baron von Fresenius

« Reply #16 on: August 15, 2008, 05:06:34 PM »

I've learned from IHD that I CAN ACTUALLY LIVE THROUGH THIS. Thanks everyone  :grouphug;

Adam
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-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
jbeany
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Cattitude

« Reply #17 on: August 15, 2008, 05:22:29 PM »

I learned I wasn't the only one around who wanted to stand up and take charge.

I learned that the stupid, awful stats for life expectancy don't mean nearly as much as they make them sound like.
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

Bajanne
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Goofynina and Epoman - Gone But Not Forgotten

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« Reply #18 on: August 16, 2008, 12:12:21 AM »

2. That you can really make friends, and get to know people, and love them, just by reading their words.

 :thumbup;  This is so very true!
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"To be found in Him, not having a righteousness of my own ...but that which is based on faith"



I LOVE  my IHD family! :grouphug;
RichardMEL
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« Reply #19 on: August 16, 2008, 06:58:04 AM »

I love twirl's avatar - it is so cute :)

I am not Casanova... if I was really Casanova I'd actually be getting some female company!! :p

I've learned the many different ways people cope, and the many different things that people on dialysis go through and ways to handle it. I've picked up useful tips, and the understanding that others have it just as hard, or worse, than I do.

I have learned a new apprieciation for life, and that it's too short, and we should live while we can do what we can when we can. Who knows what will happen tomorrow? (hopefully a transplant for me!!) :)
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
Lori1851
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This is me Lori , Dustin's mom

« Reply #20 on: August 16, 2008, 01:40:44 PM »

I have learned so much from all of you. I did a lot of research on my own. I always went to the DR with Dustin  and I could finally understand things he would talk  about. Educate yourself as much as you can ;)  Your your own advocate! I did learn at teh hospital from a nurse that Procardia they don't harley ever use cause she said it can cause heart attacks and strokes. Well,,,,,, Dustin was on it 2 times a day. Makes me wonder!!!!!!!!!!!!!!
The burse was saying Dustin had the best Dr. Then I told her who prescribed it and it was the DR she thought so highly of!!!!!!!!!!!!!

Lori/Indiana
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Gramapat
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« Reply #21 on: August 17, 2008, 01:27:45 AM »

From IHD I have learned:

1. Compared with most people's centers, I go to one of the better ones. (Even though it's Davita)

2. Epoman had great plans for this site and it looks like his administrators are following in his footsteps to make his dreams come true.
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